
At eight years old my life was turned upside down when dermatologists diagnosed me with severe psoriasis. Psoriasis is a noncontagious immune-mediated condition that inflames the skin and joints.
It became an imposing part of my life at that tender age. The personal struggle of living with psoriasis not only came from the physical discomfort of red, itchy, burning, thick, scaly lesions. Anxiety, depression, and hopelessness accompanied the physical discomfort.
Everyone is touched by physical illness. Whether experienced personally or as a friend, family member, or caregiver, disease and illness are part of the human condition. The coronavirus pandemic started in the United States with the first confirmed case on January 20, 2020. The ensuing spread and devastation revealed just how fragile public health can be in the face of a novel pathogen.
The personal struggle of living with psoriasis not only came from the physical discomfort of red, itchy, burning, thick, scaly lesions. Anxiety, depression, and hopelessness accompanied the physical discomfort.
The increasing prevalence of certain chronic health conditions adds complexity and risk to medically caring for those who contract COVID-19. Indeed, those with chronic disease already bear a great burden without those complicating effects. The Centers for Disease Control and Prevention (CDC) notes on their website that “six in ten adults in the US have a chronic disease and four in ten adults have two or more.”[1] They describe the impact of chronic disease this way:
Chronic diseases are defined broadly as conditions that last 1 year or more and require ongoing medical attention or limit activities of daily living or both. Chronic diseases such as heart disease, cancer, and diabetes are the leading causes of death and disability in the United States. They are also leading drivers of the nation’s $3.8 trillion in annual health care costs.2
While the financial costs of chronic illness to the healthcare system and individual are great, those numbers do not account for the hidden impacts of these illnesses. Chronic disease and illness often affect one’s spirituality, emotional health, relationships, employment, or even the ability to perform basic daily tasks.
Each day since my diagnosis I have grappled with having a chronic, severe, stigmatizing skin disease. Indeed, the emotional and spiritual wounds often felt insurmountable to overcome.
Struggles at Home and Beyond
I applied messy treatments and sustained painful taunts in those early years living with psoriasis. I especially hated putting liquid coal tar in a petroleum base on my skin overnight. The coal tar treatment smelled like a newly paved road while it stained everything it touched. The greasy feeling on my body made sleeping difficult. To make matters worse, my older brother called me names like “tar baby.” Those hurtful words made hours of treatments each day that much more difficult to bear.
Each day since my diagnosis I have grappled with having a chronic, severe, stigmatizing skin disease. Indeed, the emotional and spiritual wounds often felt insurmountable to overcome.
I do appreciate my parents’ care and concern as they witnessed me struggle. They sought the best medical care in the San Francisco Bay Area, desperately wanting my condition to improve. Unfortunately, though, they did not address my emotional pain. As immigrants, my parents worked long hours to establish their careers and obtain financial security for the family. Their absence from home and lack of awareness of my internal struggles largely left me to cope with the harsh realities of life by myself.
Leaving home offered little relief. At school I faced bullying, questioning stares, and insensitive comments from classmates. Students in the high school locker room asked me if I had AIDS or poison ivy. Many kept their distance fearing I had a communicable disease when I did not. Low self-esteem followed.
In my teens, finding faith in Jesus Christ began a journey toward wholeness. However, the passageway toward inner healing led me first to ask difficult questions related to God, health, and suffering.
Asking Tough Questions
I started to address my questions during my time at the Psoriasis Research Institute in Palo Alto, California. The summer after high school graduation my parents admitted me to the Institute’s out-patient psoriasis treatment center. The treatment program consisted of eight hours of treatment five days a week over a course of six weeks. Since it was too far to commute, I stayed at a family friend’s house up the road from the treatment center during the weekdays.
The time away from home afforded me the opportunity to explore the Scriptures, pray, and deeply ponder the subject of suffering and faith. In this study guide I draw from those reflections and my ongoing desire to understand psoriasis’s role and purpose in my life.
The tough questions I asked back then are still relevant today: What is God’s role, if any, in suffering? What is the biblical and spiritual response to physical ailments, especially chronic illness? How can the Christian faith community provide a place of nurture, healing, and acceptance to those who are suffering with one or more ongoing health conditions?
The Four Seasons of Chronic Illness
An apt analogy for chronic illness is the cyclical nature of the seasons. Winter months bring darkness and harsher weather, but eventually ease with springtime breezes and renewal.
Summer’s radiant sunshine and heat relent when fall brings shorter days and falling leaves.
The seasons never end.
The tough questions I asked back then are still relevant today: What is God’s role, if any, in suffering? What is the biblical and spiritual response to physical ailments, especially chronic illness?
Chronic illness, by definition, also never ends. Some days can feel better than others. Remissions provide a respite, but often symptoms return unless a cure is found. The daily rhythm of managing chronic illness gives way to seasons that can turn into years.
Amid the turning over of calendar page after page I sought to discover God’s purpose in allowing me to live with chronic illness. I became a patient advocate, health blogger, and author of a psoriasis column hosted by a major consumer health website. These opportunities gave me an outlet to serve and help others even as I needed constant treatment for widespread inflamed skin.
In seeking to redeem my painful experience with psoriasis, I found a pathway toward becoming God’s agent for change in a broken and hurting world. Paul’s sharing with the Corinthians about his own experience with life’s troubles became my inspiration:
Praise be to the God and Father of our Lord Jesus Christ, the Father of compassion and the God of all comfort, comforts us in all our troubles, so that we can comfort those in any trouble with the comfort we ourselves receive from God (2 Corinthians 1:3-4).[2]
I recently marked the fortieth year since my psoriasis diagnosis as a child. The decades-long journey with such a condition defies simple compartmentalization or explanation. But taking a step back reveals an overarching trajectory of my experience with chronic illness that mirrors the changing of the seasons from winter to fall—from despair to hope.
Guide to the Study
The devotional studies are organized into four parts that correspond to the seasons. Each season contains three sections organized by months of the year. An individual or small group can look at each of the twelve studies in consecutive weeks or as a monthly reflection. Some sections could be expanded by the leader to incorporate additional passages and questions. Alternatively, an individual can walk through the study at his or her own pace, meditating on one passage or question during a devotional session.
Each study contains a scripture reading and devotional followed by four sections. Here is a suggested plan for group meetings: Opener for 10 minutes; Reading Reflection for 15 minutes; For Further Thought for 25 minutes; and Closing Prayer for 5 minutes. This Introduction to the study guide can be read before a group session, or during the first session.
[1] https://www.cdc.gov/chronicdisease/about/index.htm.
2 Ibid.
[2] All Scripture quoted is from the Holy Bible: New International Version (Grand Rapids, MI: Zondervan, 2011) unless otherwise noted.
I was diagnosed with scalp psoriasis last july 2020, can you help me how to overcome my flare ups?
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Hi! Scalp psoriasis can be difficult and stubborn. I’d direct you back to your healthcare providers/doctors to discuss your specific situation. I also wrote a blog on scalp psoriasis you can find here: https://www.everydayhealth.com/columns/howard-chang-the-itch-to-beat-psoriasis/does-scalp-psoriasis-embarrass-you-youre-not-alone/. You may want to check out the National Psoriasis Foundation’s website for general information: https://www.psoriasis.org/scalp
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